Month: September 2016

Driving at night
Sunlight in the early morning hours
Smells never noticed
Colors never noticed
Writing without rambling (work in progress)
Incessant (renewed) need to draw, paint, create
Sleeping calmly
Waking without shaking
Retaining memories
Remembering the endings of movies
Eating spicy, new foods
Eating a meal instantly, without needing to drink first
Much less argumentative
Introspection
Appreciating the love and support in my life
Keeping the house clean
Showering/hygiene in general

All things that I’m newly appreciating with my recently extended life. A life where I don’t wake up trying to balance drinking alcohol first thing in the morning to stave off my withdraw in between throwing up because nothing will stay down from my looming liver, kidney, pancreas, spleen problems and constant severe acid reflux. Between all of that it would take me on average 2-3 hours in the morning to get enough alcohol in me to function and act as a temporary buffer for my health problems and allow me to get to be a semi-functional member of society. Most of the time it was the routine of throwing up, then taking a shot to try to find the balance of being buzzed enough to make my stomach pain and vomiting stop.

I never drank growing up except a few times in high school to try to appear cooler than I was the few times the “cool” kids allowed me near them or at dances senior year with my significant other. But still each time was an effort to try to prove I belonged somewhere I didn’t. Which, on a funny note ended with me being dumped the day after prom for doing exactly that haha – best story ever. C’est la vie…life goes on. In college it began to be a problem that laid the foundation for my adulthood Olympic gold medal career drinking. I’m not making excuses and I take full responsibility for my choices and actions. I’m just backtracking and reminiscing where exactly I slipped off the edge of social/socially appropriate drinking in order to make friends to becoming a full blown, day drinking addict.

I know in adulthood it still was a buffer socially for me. People just seemed to like me better when I was drinking…I was more outgoing and confident. There was also a part of me that had romanticized it in my head from movies and Tv. There were countless shows where people are writing or working late in their offices doing something amazing, dramatic…possibly life changing and they always seemed to have a drink with them. (Thus the Mad Men reference in the blog title) Yet it was that very thought that I got carried away with. And I wish I could put a finger on the moment alcohol changed for me. I remember a doctor I saw in Austin for vague stomach issues that asked if I drank daily. My reply was yes, but only a few glasses of wine. And I’ll never forget that this Doctor looked at me and said prophetically that even if I just drink a little daily it will eventually become a dependence.

Turns out the doctor was right. Social buffer drinking turned into angry, can’t stop even if I wanted to drinking. Hangovers turned into morning drinking because in my failed logic, why deal with a hangover when I can drink it away and feel better. As it grew, each swallow made me cry because I hated it and I couldn’t stop no matter how hard I tried before last Fall. Never once did it occur to me that what I was doing could hurt me permanently. Yea, I could drive and hurt someone or hurt myself mildly like the time I fell during Mardi Gras a few years ago and broke part of my face outside my building…. But I figured I never REALLY hurt myself. I was wrong…It’s pretty humbling to admit something has that kind of hold over you as an adult. Something that I put as more important than anything or person in my life. The world could slide into the ocean and as long as I had a bottle and a floatie I’d watch it all sink away with a smile back then. It’s also humbling when you realize that you have been judging the very people you have become most of your life. When you realize that, you realize how truly awful of a person you have let a substance turn you into.

(disclaimer: my thoughts about writing this letter to my donor family has me being more reminiscent than usual regarding my life choices, and what brought me to need a lifesaving organ from a member of this family born out of their own tragedy)

So I got an email the other day from my transplant coordinator about writing a letter to my donor’s family. This is something they tell you from day one that you have the option of doing when your one-year anniversary of the transplant is approaching. It’s crazy to think that it’s almost been a year…that last year this time I had just entered UTMB hospital and had no idea what was about to happen. I thought I was fine. Heh, “I thought I was fine” …that phrase never follows anything good.

My coordinator sent me a “sample letter” to help base mine off of. It begins with thanking the family for my “gift of life” and saying you are “sorry for the loss of your loved one.” I know a letter is a start, but it seems so very insignificant of a gesture to represent what truly happened this year. My one-year transplant anniversary is their one-year anniversary of the loss of their loved one. My extra year of life was their first year without their loved one. The first birthday without them, the first holidays without them. And that is something I can relate to since mom’s death was the year prior to my transplant and it was only 17 days apart from her death anniversary.

What to say, what to say…

What would you say if you had to thank someone specifically for granting you an extra year of life and you had to defend your actions/choices for this year and account for what you had done with that year. Seems very “parable-esque”. I feel like I should have done more this year. I know that I should be aware that some families would not be too happy about losing their loved one to help an addict, who put themselves in the situation to need a liver in the first place. It’s a lot of pressure if you think about it. From here on out, I’m alive specifically because someone died (again very Christian metaphorical I’m aware). Most people don’t naturally think that way. They think of it as “I’m here because someone created me and gave birth to me and raised me” …not died.

As some of you might not know I was adopted. My mother was a teenager who gave birth to me at the Methodist Mission Home in San Antonio and then a few days later was killed in a car accident according to the records I was allowed to look at by the lovely State of Texas. My entire existence has hinged on people being in the right place at the right time and having something life changing happen. My birth mother gave me up then died…either way she never would have raised me. My parents were at the right place at the right time to adopt me, raise me and allow me to meet all you wonderful people. Then this…someone else left this world so I can continue to be here, exactly where I am. No idea what God is thinking because I’m definitely not that important lol…

So back to my letter. What to write…what to say…what would you say to defend your actions and choices this year as a flawed human?

(P.S. The picture up top is of a bench at the Transplant Outpatient Clinic at Methodist that we all have to go to twice a week. The tiles are painted by donor families and recipients courtesy of Nora’s Home – http://www.norashome.org/)

Today is simple. No over thinking, no over writing…just silence in my head. For me it is a rare feeling and when i do feel the simpleness of the day wash over me I try to linger in it as long as possible. My life seems to go 200 mph every day for the last several years. I feel anxious a lot like most of you know. But today, there is just something in the air that just makes me pause and smile. I like it. I wish I could pause everything and look around, taking as long as I want. Also, I dreamed about flying fish that popped into bubbles when you touched them last night, so maybe that is it…

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After all,” Anne had said to Marilla once, “I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string.

Hello again all…If you hadn’t guessed or read my posts I was in the hospital again from Aug 31 to Sept 13. Official complication diagnosis: acute inflammation of the pancreas, decreased white blood cell count, anemia of chronic disease, decreased platelet count, and electrolyte imbalance. My liver counts were off as well and my new liver is already showing signs of fatty liver disease…good times. I’ve had pancreatitis bouts before and they are wicked painful. I don’t know if ya’ll remember, but a few weeks ago I posted that I had been taken off one medication and was excited about it. Turns out, taking me off of that medication was what caused all of this because my bile was too thick for my body to process without it….so I’m back on it. C’est la vie. On a good note, most of my “stuff” is now back to stable or where it was before this last stay, so that’s awesome. This stay was a little too close to home, though, so to speak. My team said this was the sickest they had seen me since the transplant. I got put on TPN (Total Parenteral Nutrition) via a PICC line (central line/catheter) and they fed me via my veins basically and bypassed my entire digestive system – pretty cool actually. Though on another hand because of the immense pain I was in they ended up over medicating me with dilaudid for a few days and for those days my mind was upside down in a jello bowl full of rainbows and monkeys singing kumbaya. It was madness lol…especially if you were one of the lucky few that I attempted to text while in this state. If so, apologies…

On a more serious note though, I did get scared that everything was happening all over again like last fall when I first got sick. It really started to mess with my mind and the last few days there before I was released. Every time any nurse spoke to me I said I wanted to go home and just burst into tears.

See what made this stay so different, like I said, was the fear. The fear of being stuck in the hospital for months again. The fear that this was the time I don’t get to go home, because like it or not that will happen one day. As opposed to when I was in ICU when I felt calm, warm and at peace…. this time I was panicking and frantic to just see my dogs, Sean, my family just one more time. Just to sleep in my own bed one more time. And yes, I understand what I was feeling was a bit irrational you could say, but the feeling was so overwhelming and so real it just consumed me. The last few days I was there I ended up sleeping with my door open because I was directly across from the nurse’s station and it made me feel even more safe.

Fear makes you do crazy things, even when you are praying for God to be merciful on your soul and pleading for just an ounce of peace. Because in all honesty, just because you pray for it doesn’t mean it will come and sometimes the fear even gets worse after.

When I felt sick sometimes, even before the transplant I would go to the ER immediately and instantly feel better just because I was surrounded by people whose job it was to keep me alive. When I felt sick and stayed at home and tried to tough it out, even though I was surrounded by my dogs and Sean, I felt panicky, unsafe…afraid.

So why was it different this time…. why was it different than when I was in the ICU, despite the obvious difference in critical conditions at both times. That answer I don’t know to be frank. This time in the hospital I also became very aware of sounds around me. Beeping, alarms, the patient next door yelling “help”, nurses talking quietly, etc. It made me think of the differences between my dogs barking and waking me up in the middle of the night versus my IV beeping or alarms going off waking me up in the middle of the night. Depending on which time of this last year you asked me which I would prefer my answer would be different. Dogs barking would mean I was safe in the comfort of my own bed…Beeping would mean I was in the hospital, possibly ICU. Why does my fear make one place preferable to another at different times. Either way, no matter what I do or try the beeping will one day stop…the barking one day will stop. Is one choice more selfish than the other for where I feel more comfortable and safe? I know most of our gut reactions would say, “of course I’d rather be with family at home, instead of at the hospital where someone is actively trying to extend my life and have my family there by your side.” But I’d be willing to bet that if anyone reading this spent some time alone and contemplated this, their answer might be different or much, much more complicated.

Food for thought…either way I am happy to be home, alive, stable and lucky to have so many people that send thoughts and prayers my direction this time. Also, some of you that asked about my room number or wanting to visit – you have my sincerest apologies for not responding, my brain was eaten by dilaudid and if I had responded anyways it would have looked something like this, “vvvvmvmmmm Halloween why….why is smdmf…..f…..tomorrrrwrww goatttts.” For real. Cheers.